Informatie:
Fout:
ID
43291
Beschrijving
Registerzentrale: Dr. Dickerhoff / Dr. Potthoff, Klinik für Kinder-Onkologie, -Hämatologie und Klinische Immunologie, Universitätsklinikum Düsseldorf
Trefwoorden
Versies (2)
- 22-09-14 22-09-14 - Martin Dugas
- 20-09-21 20-09-21 -
Geüploaded op
20 september 2021
DOI
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Licentie
Creative Commons BY-NC 3.0 Legacy
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Registry for Sickle Cell Diseases, 2.initial assessment
Sichel-Reg, 2. Ersterhebung
- StudyEvent: ODM-Test
Similar models
Sichel-Reg, 2. Ersterhebung
- StudyEvent: ODM-Test
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Last Name
Item
Last Name
text
C1301584 (UMLS CUI-1)
First Name
Item
First Name
text
C1443235 (UMLS CUI-1)
Birth Date
Item
Birth Date
date
C0421451 (UMLS CUI-1)
Registry ID
Item
text
C1549709 (UMLS CUI-1)
Country of origin father
Item
text
C1300001 (UMLS CUI-1)
C0015671 (UMLS CUI-2)
C0015671 (UMLS CUI-2)
Country of origin mother
Item
text
C1300001 (UMLS CUI-1)
C0026591 (UMLS CUI-2)
C0026591 (UMLS CUI-2)
Father´s year of birth
Item
integer
C2136977 (UMLS CUI-1)
Mother´s year of birth
Item
integer
C2319404 (UMLS CUI-1)
Sickle Hemoglobin (father)
Item
text
C0019043 (UMLS CUI-1)
C0015671 (UMLS CUI-2)
C0015671 (UMLS CUI-2)
Sickle Hemoglobin (mother)
Item
text
C0019043 (UMLS CUI-1)
C0026591 (UMLS CUI-2)
C0026591 (UMLS CUI-2)
Registry patient (father)
Item
boolean
C0585825 (UMLS CUI-1)
C0015671 (UMLS CUI-2)
C0015671 (UMLS CUI-2)
Registry patient (mother)
Item
boolean
C0585825 (UMLS CUI-1)
C0026591 (UMLS CUI-2)
C0026591 (UMLS CUI-2)
Sibling´s birth year
Item
integer
CL Item
(1)
CL Item
(2)
Sickle Hemoglobin (sibling)
Item
text
Registry patient (sibling)
Item
boolean
Birth year (child)
Item
integer
CL Item
(1)
CL Item
(2)
Sickle Hemoglobin (child)
Item
text
Registry patient (child)
Item
boolean
Date Hb analysis
Item
Date Hb analysis
date
lab (Hb analysis)
Item
lab (Hb analysis)
text
HbA
Item
float
HbF
Item
float
HbC
Item
float
HbA2
Item
float
HbS
Item
float
HbD
Item
float
Other Hb
Item
float
Other Hb
Item
text
CL Item
(1)
CL Item
(2)
CL Item
(3)
Date blood count
Item
date
Hemoglobin
Item
float
C0019046 (UMLS CUI-1)
Erythrocytes
Item
float
C0014792 (UMLS CUI-1)
MCV
Item
float
C0524587 (UMLS CUI-1)
Leukocytes
Item
float
C0023516 (UMLS CUI-1)
Reticulocytes
Item
float
C0035286 (UMLS CUI-1)
Blood platelets
Item
float
C0005821 (UMLS CUI-1)
Ferritin
Item
float
C0015879 (UMLS CUI-1)
Genetic Counseling
Item
boolean
C0017382 (UMLS CUI-1)
Prenatal Diagnosis
Item
boolean
C0033053 (UMLS CUI-1)
Pre-existing condition
Item
boolean
C0521987 (UMLS CUI-1)
Pre-existing condition
Item
text
C0521987 (UMLS CUI-1)
Special events
Item
boolean
C0080170 (UMLS CUI-1)
Special events
Item
text
C0080170 (UMLS CUI-1)
Aplastic crisis
Item
date
C0302111 (UMLS CUI-1)
Spleen sequestration
Item
date
C0748932 (UMLS CUI-1)
Splenectomy
Item
date
C0037995 (UMLS CUI-1)
Splenectomy reason
Item
text
Cerebral infarction
Item
date
C0007785 (UMLS CUI-1)
Aseptic Necrosis of Bone
Item
date
C0520474 (UMLS CUI-1)
Acute thoracic syndrome
Item
date
CL Item
(0)
CL Item
(1)
CL Item
(2)
Hand and foot syndrome secondary to sickle cell anemia
Item
date
C0852711 (UMLS CUI-1)
Priapism
Item
date
C0033117 (UMLS CUI-1)
Hepatitis B vaccination
Item
date
C0019163 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
C0042196 (UMLS CUI-2)
Prevnar vaccination
Item
date
C0876134 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
C0042196 (UMLS CUI-2)
Pneumovax vaccination
Item
date
C0071315 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
C0042196 (UMLS CUI-2)
Hemophilus influenzae vaccination
Item
date
C0019073 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
C0042196 (UMLS CUI-2)
Penicillin prophylaxis
Item
boolean
Reason for penicillin prophylaxis beyond age of 5
Item
text
Hydroxyurea start date
Item
date
C0020402 (UMLS CUI-1)
C0808070 (UMLS CUI-2)
C0808070 (UMLS CUI-2)
ACE inhibitor start date
Item
date
C0003015 (UMLS CUI-1)
C0808070 (UMLS CUI-2)
C0808070 (UMLS CUI-2)
Other medication
Item
text
C0013227 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
Weight
Item
float
C0005910 (UMLS CUI-1)
Body weight percentile
Item
integer
C0552346 (UMLS CUI-1)
Height
Item
float
C0005890 (UMLS CUI-1)
Height percentile for age
Item
integer
C2030323 (UMLS CUI-1)
Normal puberty
Item
boolean
C0581852 (UMLS CUI-1)
Systolic blood pressure
Item
integer
C0871470 (UMLS CUI-1)
Diastolic blood pressure
Item
integer
C0428883 (UMLS CUI-1)
Date of lab values
Item
date
Bilirubin total
Item
float
C0201913 (UMLS CUI-1)
Creatinine
Item
float
C0010294 (UMLS CUI-1)
reported positive urine protein test
Item
boolean
C2186573 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
Hepatomegaly
Item
boolean
C0019209 (UMLS CUI-1)
Abnormal findings diagnostic imaging of liver and biliary tract
Item
boolean
C0495790 (UMLS CUI-1)
Liver size
Item
float
C0426688 (UMLS CUI-1)
CL Item
(1)
CL Item
(2)
CL Item
(3)
CL Item
(4)
CL Item
(1)
CL Item
(2)
CL Item
(3)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
CL Item
(0)
CL Item
(1)
CL Item
(2)
ECG arrhythmia at rest
Item
boolean
C2036200 (UMLS CUI-1)
ECG signs of ventricular hypertrophy
Item
boolean
C0919857 (UMLS CUI-1)
Electrocardiogram abnormal
Item
text
C0522055 (UMLS CUI-1)
CL Item
(0)
CL Item
(1)
CL Item
(2)
Myocardial contractility decreased
Item
boolean
C3671557 (UMLS CUI-1)
Suspected Pulmonary Hypertension
Item
boolean
C0581832 (UMLS CUI-1)
C0020542 (UMLS CUI-2)
C0020542 (UMLS CUI-2)
Echocardiography abnormal
Item
text
C0476369 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
CL Item
(0)
CL Item
(1)
CL Item
(2)
Retinal Detachment
Item
boolean
C0035305 (UMLS CUI-1)
Proliferative retinopathy
Item
boolean
C0339467 (UMLS CUI-1)
Vitreous Hemorrhage
Item
boolean
C0042909 (UMLS CUI-1)
Funduscopic exam abnormal
Item
text
C0744229 (UMLS CUI-1)
Interventional procedure
Item
text
C0184661 (UMLS CUI-1)
CL Item
(0)
CL Item
(1)
CL Item
(2)
Visual Acuity
Item
text
C0042812 (UMLS CUI-1)
Specific information needs
Item
text
Comments
Item
text
Physicians
Item
text
C0031831 (UMLS CUI-1)
C0027365 (UMLS CUI-2)
C0027365 (UMLS CUI-2)
Date signed
Item
text
C3262251 (UMLS CUI-1)
Signature
Item
Signature
text
C1519316 (UMLS CUI-1)